Tag Archives: chemotherapy side effects

My ten day allocations of living shrunk last week when my team of doctors decided that I was no longer eligible for chemotherapy. Chemotherapy being my only active tool to contain my cancer which seems to be invading more and more of my body. I entered in-home hospice Friday.

I have yet to sing the praises of hospice. The main difference is that I am at home (nice) and that Mike is now a deputized nurse (not so nice.)

I don’t feel good. It hurts to talk (ng tube goes down my throat to extract fluids from my stomach into a cute little bucket.) I have received no actual nutrition since i entered the hospital. Nothing can stay in my stomach with out me throwing up. And nothing can go beyond my stomach. There is no detente in site.

I wont pretend to keep blogging much. I think the above sums up my trajectory. I will soon die. I am not scared but I am truly sad.

Thank you for finding this blog, passing it on. Perhaps it will have a future in another’s hands.

I am not encouraging visitors. I find this a time for quiet reflection.

Much love to all and most especially my care team that formed the night of my diagnosis and has stood by me through it all. And my beloved partner, always – Mike Edera.

I was asked to write the below this week. Done, I am now attacking my work space, an intimidating task as I hoard EVERYTHING just in case it could be used in a future project. I want clean. I want work surfaces. But my evil twin brings home every tossed aside item I come across. This cleaning of the art space is a soulful negotiation between my two selves.

beloved clutter

So rather than write a new blog post, I share what I just wrote for something else, hoping it just might serve a purpose here.

Spilling out on to the floor!

warmly, marcy

Chemo: How I Faced It, Tips I Might Share – A Personal Perspective

A photo documents me beaming out as the very first chemo drip started. My long hair, a source of life long pride, was having a good hair day. A table was laden with healthy foods and drink. I look strong and hopeful. The truth is moments later I asked everyone to leave, turned off the lights and I lay there crying the slow, quiet tears of defeat that seemed to befit a younger stage IV ovarian cancer patient.

My six frontline chemotherapies were pretty standard. No real crises outside of the ongoing saga to find a willing vein. Oh, to have had the starting wisdom of a port! Eventually I got “plugged in”, infused and left, counting off one more chemo treatment until they were done, as was all my bodily hair, and I walked out to build a life in remission.

I approached frontline chemo as an endurance test. I rigorously took notes and followed them attentively. I started a “blackout period” free of all supplements and green tea the day prior to each infusion that lasted for the two days after infusion. A support team coordinated having food available and people to look in the days I would feel the sickliest. The days, in fact, when the last thing I wanted were visitors. They were assigned to bring a book and leave me be, that is if I didn’t head them off before arrival with assurances of just how fine I was. Compared to the horror stories of imagined chemo, I had more good days then bad albeit always weary in a newfound way. I walked every day. I ate well. I enrolled in a local clinic for immune deficient people that offered weekly treatments of acupuncture, shiatsu (Chinese massage), and access to a cancer-trained naturopath who assigned supplements that my Western team of medical experts then approved me to take. East met West courtesy of my body.

I was recovering from surgeries to my chest and abdomen and the news that I had one of the worst cancer diagnosis imaginable. Shock, grief and a raw primal fear I had never before experienced were daily components of my initial reality. The routines of chemo survival helped me by being concrete.

My husband and I moved in with friends in the city when it was obvious I faced a huge medical phase. This decision allowed us to under-function initially as friends took over being the competent leads. They told us what to do when. This allowed us space for walking through our emotions. Living with friends infused such a sober period with joy, love and laughter. I don’t know how we would have handled this same crisis at our beloved home in the woods but I suspect the increased isolation would not have served us well.

Four years later, I am a chemo pro. My port is a dear friend and I have different tactics for the different chemo regimes offered up. My life is good; I look healthy and bike or walk everywhere. I feel strong and hopeful most of the time. I have pride in a new head of hair even if shorter.

It is with great relief and gratitude that I close out a year of arduous and, possibly, effective treatment treks from Oregon to Philadelphia for my recurrent stage iv ovarian cancer.

Cone of Happiness

I first arrived at UPenn’s Perelman Center for Advanced Medicine on April 4th, 2013. It had taken me twenty months to qualify for this tentative visit. Paperwork was signed on May 8th, Aphereisis #1 completed on May 22nd with my starting round of treatment June 5th and 6th of 2013. On March 12th and 13th 2014 I completed my 15th trek to Philly and my 11th round of treatment not knowing it would be my last. But it looks like that was my closing treatments for the part one of this clinical trial! Wow!

It’s been a complicated month since I lowered the Cone of Silence. It is never easy to interpret test results without the hands-on experts leading you and my great UPenn doc was gone until April 10th. The Internet told me a pericardial effusion was a bad sign. On April 17th, my doc could finally advise me from looking at the actual scans that the size of my effusion, a mere 1-2 cm of fluid around the heart, was not a concern. (Another probable side effect of Avistan.)

While waiting to understand my March test results, my body was increasingly crashing from the burdens of Avistan, a drug I knew I was set to go off, which tempered my complaints. What I did not expect was on April 10th UPenn offered that in lieu of dropping Avistan, they would give me a month off of treatment and add a day to my next proposed treatment cycle to determine if they could administer the Avistan. My heart dropped a little. I wasn’t sure I was up for more travel and more Avistan but I did not want to be cavalier about stopping participation in this trial given all that it has meant for extending my life.

Luckily, I had an appointment with my Oregon oncologist scheduled for the next day – my first visit to OHSU (Oregon Health Sciences University) in a year! As I biked to OHSU the next morning I found tears of joy on my face – it was wonderful to be enjoying a commute to my medical world. Entering OHSU-land (the largest employer in the city of Portland) I was awed by how affirming I find this community. I park my bike with hundreds of others. I get my free ticket for a jolly tram that arrives like a descending sculpture over my head and takes me to the top of the hill as if on an adventure versus a medical treadmill. It’s Tulip Sales Day so bright colored blooms are being sold for five dollars to support some good cause. My appointment is in the women’s center, which offers huge windows, a play area for children and adults on a wrap around balcony outside, all taking in the awesome view of mountains. Every moment at OSHU gentles the medical woes with positive possibilities. It is not so bad being sick amid a culture dedicated to hope and zest. Oh, I wanted to come home for treatment.

My appointment started early and my lovely, calm Doctor arrived with all my recent test results and said, “Wow, aren’t you doing great!” I explain that I have four vaccines left and she asserted before I have even biased her answer, “No, I think you are done. I think you have chosen a resolute and courageous path. You have gotten a lot of benefit and you will probably get no more.” I could have jumped in her lap and wept. Instead I listed my medical woes and she decisively attributed them all to Avistan, a drug she also believes in and dispenses often. But my body needs a break.

I await my two great docs deciding what is the proposed treatment plan for me here in Oregon. It is now my body’s turn to prove what it has learned from the Part One Autologous OC-DC Vaccines. I intend to cheer on my rebooted immune system in tracking down and eliminating new ovarian cancer cells. Or I may recur and get in line for a return to UPenn for the Part Two T Cell Infusion. I am fortunate to count down to either option.

May we build a world where all diseased people find they have positive options for getting diagnosed, finding treatment options and not being burdened with a payment plan. Thanks to this clinical trial, I might have a bit more time to contribute to that effort! Let’s add that to my to do list. much love, marcy

October’s trek to Philly was hard, as I feared it might be. My initial treatment in this trial back in early June 2013 had been my most challenging and now I was returning after a 55-day break. My body might just resist fresh toxins being introduced with a loud “Hell No!”

I am now in the maintenance phase. I get the same chemo cocktail, at the same dose followed a day later by the same vaccines but now on a four-week schedule versus every three weeks. This sequence happens for three months and then I get tested to ensure there is no disease progression requiring redirection into Phase Two. I hope to do this maintenance phase for at least the nine months for which we have the needed material (my tumor to mix with my dendritic cells). But I also hope the next eight months are easier!

My flights presented some sleep challenges – I arrived at 2 a.m. I awoke again at 7 a.m., very little sleep for this delicate unit. The chemo infusion was full of delays. I returned back to my borrowed condo, crawling into bed at 7 p.m. feeling tired and off. I awoke at midnight to blinding head pain, stumbled to the bathroom and preceded to vomit for the next twelve relentless hours.

The Philadelphia Chamber of Commerce, no doubt, was glad when I finally left town. My walk through downtown for the next day’s treatment included stops for further retching. I like to imagine I cast an elegant figure in my red boots, stylish skirt, tucked behind a well-placed Canada Dry delivery truck, sitting on a planter wall, leaning over as if fascinated by some plant discovery quietly voiding my quite empty stomach. I didn’t linger to ask. Once semi-stable, I continued towards my final treatments of this visit.

The vaccines were a piece of cake, thank you. I felt too lousy to exert extra energy to tense up in anticipation of the needle’s journey. When I was officially done, the team decided to infuse me with saline to replenish my fluids making the long flights home less burdensome to my depleted system. Since I was all about sitting anywhere, another shift in a chemo lounge chair seemed most divine.

Trek number ten ended with me home in my own yummy bed by the early hours of the next day. It was all just fine. But no photos or extras for this post.

The Center for Disease Control defines aging in place as “the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level.” A lovely, simple notion with a growing fan base working to insure services and community spirit are there to allow such aging in place to happen. Everyone benefits. I, though, define aging in place as waking up every night at 4 a.m. wracked by joints and muscles crying out for attention. There is no position that offers solace. I am in my early fifties. I used to look younger than my age, used to be in the top fitness level for my age, but now I am aging rapidly in place, courtesy of living on chemo.

My last ct scan documented the necrosis nibbling away at my bones, most notably my hips. Chemo apparently interrupts the blood flow leading to bone loss. What I know is that I bend to pick things up as if I am imitating an old, old, old person. If I sit too long, I rise at an attention-attracting slowness, pulling myself up and then lurching stiffly the first ten steps until I start loosening up to resemble someone younger than 80. I cross the street with care knowing that I have but one speed; there is no spurt capability to rev me out of the path of an unexpected car. I used to be known for a different one speed. I zipped as if I saw a fire that needed to be contained. A favorite childhood photo shows me as a determined toddler, using speed, hands engaged, forward leaning, eyes focused, as I jettisoned my toy baby carriage to whatever captured my attention. I was always on a mission.

Marcy on the Move

Ironically, as I return to chemo next week after a 55-day break from all treatment, I anticipate some lessening of joint discomfort. The cytoxan (one ingredient is mustard gas) is used in a pill form to treat arthritis. When I started it back in early June it miraculously cleared up my walking woes – I went from a woman needing a cane to a woman moving through life with relative ease. Perhaps that will happen again!? While I hope for some respite, I know that same recipe of cytoxan and avistan will further the cumulative damage to my body in its effort to keep cancer at bay. And, of course, the nausea will be back.

I need to accept this body under siege as my own. I have been fast forwarded through an aging process courtesy of treatments. I look older but mainly I feel significantly older than my years now. The ct scans show that it is not an imagined feeling. The wear and tear is real. While I resent this, my form of acceptance has me seeking out the humor in it. There is much irony to be found.

I, who fret not getting to live through old age, am having it delivered to me. It seems that really, middle age is what I may not experience. My entry into cancer world was an entry into senior world, cancer being a disease that disproportionately impacts older people. I am ‘retired’ despite my current age being labeled as “peak earning years” – another joke as I downsize text messaging out of my phone plan to save a few dollars. I join the daytime tai chi classes filled entirely with elders. Almost everywhere I go I am the youngest, often by far. My mother and I now face the same issues – burial plans, sleep time discomfort and movement challenges. But she is in her eighties. She is chronologically suited to this aging in place.

An early on cancer pal, Val, since deceased at the age of 44, died looking so young and angelic – her wasting body resembling some innocent 10 year old. She was a filmmaker and poet who loved to get people’s stories out of them. She loved elders – the wisdom and whatever else attracted her. I never fully understood. She told me her biggest regret was not getting to live those senior years. Her plan was to interview them to gain access to the experience. I never asked her how she dealt with her own aging in place – frankly, her treatment arc may not have given her that experience. She went more from exuberance to frontline treatment to long remission then to 18 months of active wasting away. My trajectory is more steadfast decline.

So much of life’s journey seems to be about taming the ego. I am middle aged but feel much older. It sucks but really, why care? If I let go of my ego (Don’t I look good for my age?) I can enjoy the sublime truths of being multi-age, nimble once, swerving towards dowdy now and voluntarily raising my hand for any treatment option that keeps me on this planet albeit feeble and slow moving. The same day as I drafted this I watched an older woman in her late 70s perhaps even early 80s, quite attractive, move swiftly from curb to the middle of a busy street where she then adopted a more sedate pace. I admired her. That is who I intended to be; instead I stick to my new one speed. But in that speed I bike wherever I need to go, I accumulate 12,000 steps daily per my pedometer’s tracking with 30 minutes of these steps taking place on a trampoline as I jog in place with weights in my hands hoping to rebuild some bone. I am not what I expected at this age or any age but with my new mantra of ‘slow and steady’ I get where I want to be and I have gained skills in leaving my ego aside. Perhaps, I am a more evolved person at this sedate pace, as if I care.

I spent an hour yesterday cursing my way through our households vast ruler supply seeking a devise that measured in centimeters. I was determined to respond to my newly arrived test results with my head not my heart (or whatever part of me ceases to function when it encounters dreaded words like new and growth and lung.) With a ruler found that used centimeters I could make measurable those words. And so my test results that initially took my breath away were neutralized a bit.

I did not get a wonderful result on my ct scan of this week. But it was at worst soft bad and, perhaps, almost neutral. I dont see my doctor until Friday so I still speculate. Of my 5 cancerous nodules in the abdomen and pelvis 3 showed modest shrinkage, two showed modest growth. Two new shadows have now made it in to my left lung for the first time but only time will tell if they are indeed cancer and if they chose to grow. My right lung stays stable.

My big goal these days is disease stability. My current pattern of some shrinkage and some growth, might average out to minor changes in disease volume but they are not disease stability. If I was not midway through a new treatment regime these results would be more dire. But since these drugs are slower to work, we can look at the possibility of positive results around the corner. Why the hell not.

Its not been an easy few weeks. The main drug I am on, doxil, aka the red devil, requires enormous preemptive work to minimize the devilish impacts of burning, burning, burning. A chemo buddy (thank you, Holly) helps me ice during treatment (not easy!) and then I stay on ice as much as I can for the next few weeks. This drug is a cumulative one so once the burning starts it only gets worse with each cycle. There is no real solution for it – ice, salve, ice, salve. Avoidance is your best plan. I now better understand the starting suggestion of no repetitive motions which made little sense when shared as advise – why did that mean no washing of dishes or housework. But now I get it. (Of course, they are too shy to say no intercourse.)

My poor butt brings me to tears as I try to find clothing that I can wear and a chair that can accommodate. And then there are the poor hands and feet. The left hand curling to a painful claw for the majority of each treatment cycle. The feet look better but hurt, hurt, hurt especially when rested in the only shoes I can still wear. I hobble and curse. And by bedtime, cry.

Initially, I so wanted the test results to be good enough to keep me on doxil because that would mean that there was some positive news after a long year of disappointments. But the night before I got the test results I finally decided I could endure no more of this being burned alive. The test results arrived as the peak of the burning passed. I live in the now and right now the residual sores on my butt, hands, and feet are manageable. I presume that my cheerleaders and I will manage another few cycles of this hell if the doctor recommends it.

For those who visit, you may witness more pain. And you may be asked to sweep a room, or straighten the bed. (There is just so much that I can not do while on this drug. And Mike is needing to do so, so much.) If everyone completes some minor task, the house may stay neat and that is the kind of detail that makes the world of difference right now.

In the last week, as I tried to relocate from one spot to another with enormous pain, I told Mike, “dont ever let anyone say ‘that at least she is out of her misery now’ because I can accept this pain.” Of course, a few days later, I wondered. But pain passes. And then I stare in awe at a flower dropped off by a friend and appreciate being here. This is hard but so is life which I so choose. And so that is my small update.

Luckily, by Saturday’s dance part I should be at my peak of recovery – hope to see you there. xoxo marcy